Energy

One thing Chronic Fatigue Syndrome does is make a person very aware of energy. I’ve had this illness for 15 years and I’ve made a study of the stuff. In all that time, I’ve learned a number of things that my doctor doesn’t know.

Always they’re asking me, my doctors, How’s your energy? and Does this give you energy? and for years I never understood why those questions seemed so much more complicated to me than they did to them. But now I know why - its because of the eskimos.

You have heard, I imagine, that some Eskimo languages have 100 words for “snow?” Well, when I first heard that fact I didn’t truly understand it. I thought it was because Eskimos were poetic people, who had a deep love affair with snow. Their relationship with snow was so meaningful to them that they had created 100 names to call their love - out of honor or passion, or even fear, perhaps. Now I know that I missed the point entirely.

The fact that Eskimos have 100 words that correspond to the one thing we call “snow” is not a reflection of their poetic nature. It is a reflection of their superior experience with the stuff. It is a reflection of a need in that culture, which differs from our own.

Here’s the thing: There are 100 different kinds of snow. Each is different and distinct. The eskimo life is so governed by and effected by snow that these differences are obvious, vital and significant. They need 100 different words to express the differences which, to us are so insignificant as to not be noticed, but to them are so substantial that they can’t see how you could even function if you couldn’t differentiate between them.

Think of it like this. Suppose an alien came to our planet and studied us, then went home and told his people that we were such a quaint culture that we had thousands of words for “animal.” We had the words, “dog,” “cat,” “sheep,” “horse,” - thousands of them and they all meant animal.

Now, to us it is obvious that these words denote different things - things that are distinct from each-other. We need all these words to communicate. We can hardly think of the confusion it would cause if he called all these things, “animals” and nothing else. Well, snow (to an Eskimo) is the same. Each of the 100 words denotes something significantly different from the others, which needs its own name to be talked about effectively. We look on, like the aliens who see all animals as the same, and say, How poetic. They have 100 words for snow. And they look at us and say, How can you talk about dogs and horses and sheep with the same word? How confusing would it be if you didn’t have different words for all these different things?

Well, (to get back to my original subject) energy is just like that. Chronic Fatigue Syndrome is the ultimate fight for energy. Few people spend their lives so aware of what brings energy, what takes energy, and what is energy than those of us for whom energy is in constant low supply. 15 years and this fight has taught me a lot about energy. And what I have found is that there are 100 distinct and separate things which fall under the single word we call energy.

Actually, I’ve never counted them. I doubt there are 100. But there are many. And the reason my doctors’ questions always seem so much more complicated to me than they understand them to be is that each one (each type of energy) effects me - and is effected by me - differently.

They are asking, Does the animal live in your house? But I don’t know if they mean the dog or the horse. So how do I answer?

They are asking, Do you eat the animal? And I eat sheep and cows, but I don’t eat dogs and cats. So how do I answer?

Occasionally I have tried to sit down and map out the different kinds of energy I have identified. I have tried to define them. That’s not entirely simple. Each kind of energy, while distinctive, interacts with others. They effect each-other. So it is sometimes hard to isolate them. But it is interesting to try. And here is what I have so far...

There is mental energy. This is the energy to think clearly and in an organized manner. It is the energy it takes to learn or to do academic things like mathematics and writing. And there is emotional energy. This is partly the energy that comes with feelings of happiness or anger, but more specifically (because some of the energy that comes from intense emotions is actually adrenaline energy) it is the energy that comes from the more mellow emotional states of contentedness or is depleted by the more mellow emotional states of depression. There is adrenaline energy, which is a very physical kind of energy but which has an emotional component. (In-fact, I have often wondered about this kind of energy, if it is actually a kind of energy at all. It may be its own kind of energy, or it may simply be a catalyst which intensifies certain kinds of physical, mental and emotional energies all at once.)

There are a number of kinds of physical energy. There is a deep energy that is almost cellular. When you’re out of this, you can’t function, can’t speak. You can’t open your eyes or life your head. There is surface physical energy that gets used up when you work hard and then comes back after a little bit of rest. And there is the true, baseline energy. The energy that you never feel or see, that is used only by those automatic body parts to keep you going. This is your last line of defense. When this is gone, so are you.

These are all body energies. There are other energies as well. There are world energies - the kind that can be seen in auras and traced in body meridians. These may be only the physical, visible manifestations of different aspects of body energies, but I’m not sure. So I will call them something different until I am.

There is chemical energy, such as is found in gasoline and electricity. But then, that distinction can also be confusing because its all chemical energy, on some level. The body’s energy is all tied to chemicals, just as all aspects of the body is. We can talk about energy or we can talk about ATP. On some level its all the same.

I have tried every treatment there is for Chronic Fatigue Syndrome. And my doctors always ask, Did this give you energy? Well sometimes it did - but it hurt things all the same. They never understand. Science likes to simplify things, I know. And I don’t mean to make it complicated. But the thing is, its not my fault that it is.

Some things give me mental energy. Or emotional energy. But these only serve to keep my mind awake, straining at the tether, refusing to sleep. And if they don’t replenish my physical energy - my deep-down, cellular energy - then they don’t help. They hurt. Because no matter how much my mind wants to jump off of tall buildings and sore, if my body cannot I can’t.

Its hard to describe Chronic Fatigue Syndrome to others. You say, I’m tired all the time. And they say, Lord, I know. We all are. If only life would just slow down! Or they say, I know, I stayed up till 2am last night and I’m exhausted. Or they say, You’ve got to take time out to get the rest you need. We all just do too much. You have to slow it down.

But that’s not what “tired” is about. Not for me. For me tired is about pain - a deep pain that feels like it comes from my organs or my cells, all the time and never lets up. And its about the feeling (and sometimes the reality) that if I don’t do something to ease that pain, my body will stop working, I wont have the energy to breath. Its about a kind of tired that is not touched by rest - at least not in any regular way (sometimes if I sleep for 18 hours a day for six months, I begin to repair).

Chronic Fatigue Syndrome is not about the surface energy. Its about the deep stuff - the cellular level of energy that most people never deplete, and so never even feel. The closest most people get to it is when they get the flue. You know that day or two when you can barely lift your head? When your body aches from the inside out? That is the kind of tired I mean. On a normal day. Every day.

Or do you remember, in college, during finals week, when you pulled two all-nighters in a row, how you reached a point where every part of you hurt and you cared about nothing but lying down? It was hard to breath and the world seemed unreal? That’s also close. On a normal day. Every day.

It is this deep, cellular energy that chronic Fatigue Syndrome depletes. And just giving back some other kind of energy wont necessarily fix it. In fact, it may hurt.

The thing is, normally, if your physical energy is so deeply depleted that you can’t breath without pain, most of your other kinds of energy are pretty low too. Its hard to be mentally alert if you’re that far gone. Same with emotions - they are probably not jumping around doing gymnastics either. For most people, as you replenish this deep energy, the other kinds come back too. But its different if the deep energy can’t be replenished normally.

If you are low on deep physical energy for months, or even years, it is possible to replenish all the other kinds of energy and leave that one in the dust. It is possible to get back your mental energy - your mind races, thinking and planning and dreaming your life into being. It is possible to get back your emotional energy - the excitement of your thoughts, the euphoria of structured thinking, all of it shoots you up into happiness that is physical and courses through you.

Even your surface physical energy gets into the game, telling you to get up and jump around, do something, live! And for the thousandth time, you do - you jump out of bed, ready to start a new day, elated to be alive - and you fall to the floor, gasping. And once again you are shocked. As you are every day. Because you are energized, you are alive, you are passion incarnate - and how could this body be falling to the floor, unable to stand, unable to hold you up at all?

And you forget, every day. And you wake up expecting to be well, ever day. And you grab for your life. And you fall. And you remember, every day. That your body can’t keep up. That the energy you feel does you no good - because it is not enough. And after 10 years, its still that same. You’d think you would learn. But every day is the same. You wake up and forget that you are sick. You wake up believing you are well. And you are shocked - again, after doing this every day for ten years - to find that you are not.

When I was a child, and I got excited, I use to jump. Just jump. I would bounce around a room, shouting and talking or just jumping, because I couldn’t contain my excitement any other way. For years, as I became an adult, I did the same thing. But then there was this illness. And my body no longer had the energy to jump. But I would forget and I would jump and jump, and suddenly I would be gasping for breath and collapse against a wall, shaking and unable to stand. And my family would look on with a mix of frustration and fondness and it was clear they wanted to ask, Why do you DO that? Why do you DO that to yourself? Just moderate. Just smile and be happy. Now you’ll spend the day in bed, unable to lift your head. Why can’t you conserve that energy and sit on the couch and let it be?

But I couldn’t. Because the emotional energy I had was so strong that I forgot. I forgot that my body couldn’t hold it. I forgot that my body couldn’t jump. Every time. For ten years. And so I jumped.

My mother has a collection of cards with beautiful watercolor paintings and equally beautiful sayings. They’re popular - you may have seen them. One Christmas, she gave me one that was so apropos that when my sister saw it, she laughed out loud. Oh, that’s you! she said, That is so perfect for you. It says, “I get up, I walk, I fall down. Meanwhile, I keep dancing.”

The dancing comes from a different kind of energy - it comes from the emotions, the mind, the sprit. These things are full, they are bursting. They are not depleted at all. But the body. The body. That is a different story. That energy is gone, way gone. That energy is down, way, way down.

Ritilin give you mental energy (which for me, who loves thought and learning always brings along some emotional energy as well). I can sit at my desk and write for hours on rittilan. But it doesn’t help my body energy at all. And over time, it runs it down. Too much sitting up when my body needed me to be resting. So does ritian help? Well yes. And no.

With this illness, when its bad, I can easily sleep for 24 hours or more. When it is moderate, I usually wake myself up at around 12 - my body craves more, but that doesn’t leave much of a life for me, does it? It is not uncommon for me to need 18 hours of sleep per day to keep going well. That is, in order to have a few hours of good, physical energy available to me at all. Many people have tried to tell me that getting too much sleep is the problem in the first place. That anyone that sleeps that much is going to be out of whack. Its not good for you.

We all know that our bodies can get to a point where laying around the house us not helping us feel better. We need the physical activity now more than we need the rest. But we feel tired and its hard to get up and get moving. When you say you sleep for 18 hours a day, that’s what people think is going on. But it isn’t. The truth is - after 15 years of trying to force my life into every pattern I could imagine to find one that would help, what I have to admit is that my body just really needs that much sleep.

Chronic Fatigue Syndrome is not as well understood as some illnesses. But it is better understood now than it was ten years ago. Ten years ago, congress gave the CDC a grant to study Chronic Fatigue Syndrome and the head of the CDC was so convinced that Chronic Fatigue Syndrome didn’t exist (that it was depression or laziness and al those people just needed to go out and get a hobby) that he gave the money to other projects instead. It was a big scandal when it was discovered and finally the money was returned and the research funded. And what do you know, they found out that there is a physical basis for the thing. It really exists.

So there has been research now. And we understand it a bit. The way I explain it is this: Somehow, toxins build up. They might be environmental. They might be internal - the result of the poisons we all produce when we go through an emotional trauma, for instance. In some people it happens all at once, due to some sort of poisoning. In others it happens over time, building up with little effect until one major event (an exposure to a toxin, an emotional shock) topples the whole system. In any case, a person’s body hits a certain point at which the cells are so bogged down with toxins that they cannot deal with them all any more. Things begin to break down. Normal process are slowed or blocked. The body begins to loose its ability to make, ATP, the chemical which it turns into all of our various kinds of energy. You get sunshine, you eat good food, you exercise. But your body can no longer turn those things into energy. And so you get sick. And you get tired. And nothing seems to help.

In most people with Chronic Fatigue Syndrome, the fatigue is the first major symptom. But once that’s lasted some years, other things begin to go wrong. To me that only makes sense. The body doesn’t have the energy it needs to function. Not just in the ways we see, but in every way. It is cutting corners. Organ processes are getting short changed. Over time they break down. There just isn’t enough energy to go around.

So the stomach stops working right. It becomes hard to eat, hard to keep anything down. The nervous system wigs out - you get facial twitches and body jerks, increasing the more tired you get. You shake. Your brain doesn’t work right - sometimes you think clearly enough to complete a simple sentence. Your heart beats too fast or speeds and slows at the wrong times.

Healthy food helps. Putting good food into your body without adding a lot of toxic chemicals along with it is essential to keeping yourself going. Being out of cities helps. I don’t know if its the toxins in the air or just the exhaustion involved in having to be aware of so many things at once. Maybe its both. Exercise helps, sometimes. And it doesn’t. I mean, you need it, if you can get it. But it depends. It always depends.

Some days exercise will do what its suppose to - struggling through will suddenly allow your energy to shoot up and energize you in the end. But some days that doesn’t work. No matter what you do, no matter what you try. Some days it just leaves you weak and shaking, no matter what you do. And it takes days to recover and get yourself back to a place where you can try it again.

Its hard to say why the exercise works sometimes and not others. You obviously can’t never exercise. Your body will fall apart (you know, more than it already has). You will go crazy with the feeling of weakness. A person needs movement in their life.

But when the Chronic Fatigue Syndrome is bad, something in it stops the exercise from working. So you sleep all day just to be able to get up and walk once around the block. And then you collapse and sleep all day again. And you keep doing that forever until something changes and finally (finally) the exercise begins to work. And you find that, when you come home from walking around the block, you feel ok. You’re tired but not in pain. You sit on the couch and read a book. And after a month or two of that, you actually feel good. You go two times around the block. And a year later, you’re back on your feet and living again.

Of course, my life is not always like that anymore. I have had years - many years - when that perfectly described my days. But I have also had years - such as this one - when I can do much, much more. I still sleep at least 12 hours per day. I need more on a regular basis. But when I get up, I do hard physical labor. I feed horses and ducks and chickens and goats. I walk around the mountains and I repair fences and play with my horses and my dogs. Last year I had almost 9 months of feeling so good (almost normal) that I had days at a time of working 10 and 12 hour days of hard, physical labor, outside every day. It was amazing. I thought I was healed.

That didn’t last. My energy went back down. Now I’m back to 4-5 hours of work per day and 12 - 15 hours of sleep. Some days I can work hard during my 4-5 hours, pushing myself physically and doing things many people are never able to do. Other days I am hard put to be able to sit at my desk and keep up with my paperwork or write. Some days I really can’t sit up at all - I take my book and read on the couch. If I have to feed the animals, do am gasping and shaking, needing to sit down in between every one. I worry that I will collapse and not make it back to the house - that has happened before.

I am able to force myself into a “normal” day once in a while, if I try. I get 8 hours of sleep and then go to town. I babysit my nieces or grocery shop, or meet with clients. Usually by the end of a day like this, I am shaking and in pain. And sometimes I find that I gambled a bit too high - I can’t make it through at all. I get sick (bronchitis or a bad cold - my immune system crashes and everything rushes in) or I am just too weak to think - I can’t drive, or see or (sometimes) even remember where I am or where I live.

But usually I make it through a long day - I push my way and hide the way I feel. And I pay for it the next day (or, more likely, the next three days). I sleep and am too weak to feed or work or do anything. And then I build back up again. Its a trade-off I make. And it works, usually. It gives me options for how I live my life.

In any case, I do with my life, more in the few hours I have than most people do with all the time in the world. So maybe I shouldn’t complain. Why am I able to make so much of the little time I have, when other people struggle for meaning amidst all the time in the world? It all comes back to energy, perhaps.

My physical energy is blocked. I eat good food, I get sunshine, I exercise. But my body can’t turn those things into energy as it should. Into physical energy, at least. But I have another kind of energy in abundance - its mental, emotional or spiritual. Its the essence of me. And it doesn’t take food and sunshine and exercise to replenish it (though, without these, it begins to ebb as well). So what does it take? That’s the question that intrigues me. Where does it come from? Why doesn’t it fail?

100 different kinds of energy. And all do different things. And, while they effect each-other, they are separate and unique. And they are built from different blocks.

Physical energy is almost all built from food, sunshine, exercise and rest. But what of the others? They are effected by these things, for sure. Or rather, they are connected enough to physical energy, that if that energy is too low, they are likely to be as well. But at their core, they come from something else. They are built from different blocks. My body can barely move, but my mind and my emotions sore. Why? What feeds those energies? Some people are prone to depression - I am not. Rarely in my life has anything depleted my emotional energies for long. Is that just chemical? Or is the chemical a result of something more? What is the food, the sunshine and the exercise for my mind, my heart and my sprit? What supplies those energies in abundance, even when my body is barely scraping by?

This I would like to know. As I would like my doctors to know the differences between each kind of energy I have. And as I would like my fellow human beings to know what it means when I say “tired” - why I use a handicapped flag one day when I was running up mountains the day before. But that is not a luxury that most of us ever have - to be known, to be understood by all. So I will not expect it. And I will keep trying to answer complex questions which the asker sees as simple. And I will keep using my handicap flag, when I need it, despite the pursed lips and shaking heads from those who don’t understand. Because Chronic Fatigue Syndrome is a difficult illness. But it is what I have. It is part of what I am. And so, in the end, there’s really nothing else to do except keep dancing.